In this issue

Walking the Line

The following case presentation is sponsored by SPP’s Pediatric Bioethics Special Interest Group. The authors describe an ethical dilemma that occurred in the context of clinical care, provide two different perspectives on the dilemma, and report the actual outcome of the case. We recognize that there is usually no “right” choice when such dilemmas arise; the intent is to present alternative interpretations and stimulate dialogue about ethical issues in pediatric psychology.

How much PHI is enough?

Walking the line between clear professional communication and protecting client confidentiality in the context of HIV status disclosure.

Case

Sarah is a 14-year-old African American young woman perinatally infected with HIV who has not yet been made aware of her diagnosis. She is cared for by a multidisciplinary HIV team that provides medical and psychological care as well as case management. Outpatient psychotherapy is also available. For a number of years, the issue of disclosure has been raised with her mother, but mother’s traumatic acquisition of the virus has resulted in a debilitating emotional response around discussions of disclosing to her daughter or others in her life. While she has been diligent in ensuring Sarah is adherent to medication, she has been avoidant of clinic appointments and has traditionally declined outpatient psychological services. During their most recent clinic appointment, mother made some progress in considering disclosing Sarah’s diagnosis to her. She also expressed willingness to engage Sarah in outpatient care to address symptoms of anxiety that mother believed to be contributing to poor academic performance.

Dilemma

During the intake session at the outpatient clinic, mother indicated that she was still hesitant to discuss disclosure and wanted therapy to address Sarah’s anxiety only. Following the intake, the therapist, Dr. Barker, believed that the ambiguity and secrecy surrounding Sarah’s illness may be a contributing factor to her anxiety. In preparing the evaluation report, Dr. Barker sought consultation from Drs. Houck and Plante about whether to include the diagnosis of HIV. Dr. Barker wanted to discuss the significant role of Sarah’s diagnosis in the case conceptualization, but was concerned that its inclusion had the potential to reach unintended audiences (e.g., school personnel). He worried that mother might not anticipate that her daughter’s status would be included in a psychological record should she consider releasing it to others. He was concerned that other parties might then not only discover Sarah’s HIV status, but might also deduce her mother’s status, and that the family could be adversely affected given the stigma associated with HIV. Dr. Barker was also concerned that informing mother that the diagnosis would be included in the report may present a substantial barrier to her and Sarah’s involvement in outpatient therapy.

Perspective #1 – Dr. Houck

One ethical principle that applies to this scenario is Professional and Scientific Responsibility, whereby psychologists are expected to “cooperate with other professionals and institutions to the extent needed to serve the best interests of their patients.” In order to provide documentation that describes the relevant issues in a way that can be interpreted by other professionals, it could be argued that the inclusion of Sarah’s diagnosis is necessary, given its centrality to the psychological issues the family is facing. Should anything happen to the provider that rendered him unavailable and required that care transfer to another, cryptic notes could make it difficult to provide quality care. Presuming Sarah’s psychiatric record is treated as confidential in accordance with professional standards, her diagnosis would not be shared except as needed for her care and with the consent of her mother. Furthermore, summaries can be constructed to provide pieces of the record needed without sensitive information that might be irrelevant in some settings (e.g., school). However, without a complete record in existence, it could be argued that the standard of Professional Responsibility is not being met.

Perspective #2 – Dr. Plante

The APA Code of Ethics stipulates that “Psychologists have a primary obligation...to protect confidential information” and that they “take reasonable steps to avoid harming their clients.” Dr. Barker must weigh potential harms associated with including HIV status in the report versus excluding a significant medical diagnosis in his conceptualization. Frequently psychologists must weigh clinical and ethical considerations that are in opposition with one another.

If Dr. Barker decides that HIV status must be included in the report, he can use the informed consent process to assess mother’s understanding of the information contained in the record, who will have access, and potential implications of the information being shared, so that she can make informed decisions about release of the record and future treatment. Psychologists also need to be mindful of how records will be treated after termination of therapy and of how others who have access to the records may use them. For example, if mother requests that the psychology record be sent to her child’s school years later, Dr. Barker may not be available to write a summary or to discuss with mother which information she would like the school to receive. Also, other institutions or providers may not protect information to the extent necessary to prevent harm to the patient.

Accurate recordkeeping serves an additional purpose of protecting a provider in the event of legal or ethical proceedings. In this case, does the clinician feel that the record will accurately represent his conceptualization and treatment plan? Also, third-party payers require that a psychological evaluation include a multiaxial diagnostic framework. Will the clinician meet the recordkeeping requirements for billing if he does not list the patient’s medical diagnosis, particularly if it is perceived as relevant?

Outcome

Following consultation, Dr. Barker decided not to include the HIV diagnosis in the intake evaluation, but instead referred to a chronic pediatric medical condition about which Sarah was only partially informed. Consumers of the report were then referred to Sarah’s medical record for more details. He felt this approach would accurately document the dynamics around the disclosure process, while maintaining confidentiality around mother’s and patient’s HIV status by placing an additional requirement on the consumer to obtain mother’s consent to access Sarah’s medical records. This extra precaution would likely complicate communication between treating professionals, but would allow mother to maintain power over who received medical information about herself and her daughter. Shortly following this decision, Sarah’s school requested the report for upcoming academic planning. After clarifying with mother what information she was willing to release, an appropriate summary was written and sent to the school.

Recommended Reading

Authors

David H. Barker, PhD, is a 2nd-year Postdoctoral Fellow training as a pediatric psychologist in the Department of Psychiatry and Human Behavior (DPHB ) at the Warren Alpert Medical School at Brown University. At the time of the consult, he had been working in the HIV clinic for two years.

Christopher D. Houck, PhD, is a staff psychologist at Hasbro Children’s Hospital and supervisor of psychology services for its pediatric HIV clinic. He is also an assistant professor in the DPHB at Alpert Medical School.

Wendy A. Plante, PhD, is a staff psychologist at Hasbro Children’s Hospital and a clinical assistant professor in the DPHB at Alpert Medical School. She is also a member of the Rhode Island Psychological Association Ethics Committee and the APA Advisory Committee on Colleague Assistance.